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Symptoms of "Photosensitvity?"

I talked to my rheumatologist about several instances of being in the sun and then feeling nauseated and tired...just generally 'sick' afterwards. She said, no that's not photosensitivity...she didn't know what that would be. She said photosentivity is just a skin thing - rash and sores after being in the sun. I don't know what to think about that. I really do get 'sick' sometimes after being in the sun. I don't have any significant skin involvement - no ulcers, no bumps. Just a malar rash sometimes (face, neck.) So, is my sun problem 'real' and part of lupus or is it just coincidental - maybe not really related to the sun or the disease at all? Makes me wonder if I'm imagining things..... Anyone have similar symptoms from the sun?

Jody

"If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

photosensitivity

Are you familiar with Daniel J Wallace? He wrote "The Lupus Book". He has a website and you can google it to see his CV. Anyway, in The Lupus Book he talks about having some patients who are so photosensitive they have a Lupus flare just from sitting under a flourescent lamp. Their flares are not just rashes but include other symptoms like fatigue, aching, etc.

So I don't think the impact of photosensitivity is confined entirely to the skin. The rash might appear there, but maybe thats only because its a surface we can see. I have a friend with severe organ involvement who won't "do sun" at all. No picnics, no long periods outdoors at all. In her case when the flares come, its her skin, yeah, but also her kidneys and eyes and brain, etc.

I never get rashes immediately from being in the sun. My symptoms are always exactly like yours - nausea, fatigue, and just an overall sick feeling. Our sun sensitivity can sometimes cause a Lupus Flare. I think that our nausea etc. are precursors to a lupus flare. So, if we do not get out of the sun, get some rest and take care of our bodies, we may have a flare-up which then could include manifestions on our skin, among other things.
Not everyone reacts to the sun in the same way. Yes, many people see the results as rashes etc., however, like you and me, it takes a while before we see those symptoms. But, we immediately feel sick! So, it is not your imagination. There are many of us who react this way to the sun :lol:

I'm happy to know I'm not just a hypochondriac! And Saysusie, now that you describe it, it explains my last couple of big flares a bit more. I had to travel in a car both times, 3 or 4 hours each way, and it was sunny. I tried to cover up, but we don't have tinted windows so that was hard. And, of course I also got very tired. Anyway, after both of those trips, I got very sick again. I didn't make the connection to sun exposure, but it makes sense that it could have had an impact. We're going to get both cars tinted now and I'll be much more aware of that. It's so good to have a place to check out these things with people who know what I'm talking about! Thanks, everyone. You're the best!

Jody

"If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

Jody, I don't have any significant skin involvement other than a malar rash, but I am extremely sun sensitive. My doctor has always told me that exposure to UV can trigger a flare whether you have "skin" symptoms or not. Even in some indoor situations with certain types of lights, I will start feeling woozy and sick to my stomach after just a few minutes. There are some stores I just can't go into. And there have been a couple of flares in the last year where my organ involvement got significantly worse, and both of them were after being outside for a fairly long period (a family reunion and the twins' play off basketball game), even though I was wearing sunblock and long sleeves. Both times my labs showed a big increase in sed rate and decrease in complement levels. So it's not just a psychological reaction on our parts - our bodies are physically reacting to the UV exposure. Remember that glass will only filter the UV - it doesn't block it - so being in a car or even next to a sunny window window can bring on the symptoms. I had to have the windows of my office treated with a special clear UV film - since our offices are located right on the Ohio River, all of the offices and conference rooms have floor to ceiling windows along one wall. Perfect for someone with lupus, right. I could just keep the curtains closed, but I hated to give up the river view.

I get a malar rash when I go into the sun, but a lot of the time, parts of my sun-exposed skin (especially my arms) break out in Dermatitis! :? It often happens when I am wearing short-sleeves and I lean my arm against the "window-ledge" of the car, while my mother is driving. Does anyone else have this? :?

My skin is EXTREMELY sensitive and I am a highly allergic person, so I don't know if this plays a part at all?

I know what you mean, Marycain. All of our offices overlook Lake Superior (we're just a block from the harbor) and it's just lovely. Unfortunately, I don't have UV film on the windows, so as the sun comes around, I have to shut my blinds. Grrrrrrrr. Million dollar view - no tolerance for the sun...just not fair! :x

"If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

I can be in a room with uncovered florescent light bulbs for 30 minutes and feel the effects of the UV. One office I work in has nothing but uncovered florescent lights so I have to wear sunscreen all over my body (even under my clothes) and a hat made out of UV blocking material that I bought at Coolibar.com or else I'll start feeling sick, tired, and achy within 30 min.

I *always* get the malar rash when I go out in the sun even if I use sunscreen, hat, glasses, and makeup with sunscreen. Since I have a two year old, I have to go out sometimes. I can't keep the child indoors forever, ya know. I just try to limit the amount of time outdoors and go out very early in the day or late in the evening. I bet my neighbors sometimes wonder what in the world I am doing on the trampoline with my daughter at 7:30 in the morning! LOL! Oh well....